Sunday, May 23, 2010
So let me bring you up to date on all that has happened since last post. I was in the hospital when I wrote you, in the middle of brachytherapy. The following morning, which was a Friday, I had my 3rd and final treatment. The treatments themselves were very quick, only a few minutes. I was hooked up to a machine which fed a wire through the plastic catheter (remember - the one hanging out of my nose) until it was in the precise location of the tumor. Then radiation was applied through the wire while it moved a few millimeters at a time. Once done, the machine pulled the wire back out of the catheter. Kind of spooky having a machine with no one operating it shoving a wire in and out of my nose but the treatments all went well. After the last one the doc removed the catheter by grabbing hold and pulling it out. A couple seconds of discomfort but much easier than the surgery required to install it.
But the real bomb was dropped on me after the catheter was out; that's when the doc informed me that he now wanted to do a course of standard external radiation. Wait a minute here! Didn't we do the brachytherapy because I have already received the maximum amount of external radiation to this area? That is when I got an extended explanation (in halting English with a heavy Chinese accent) about how I have an area of tumor in the same bronchial tube that was hidden by the original tumor on the scans and he just discovered it by using a camera through the bronchoscope during the installation of my catheter. He said he had a small window to work with through which he could give me external radiation. Great! Now I have another procedure that will put my starting Nexavar back an additional month. After answering a few more of my questions he handed me a slip of paper with my first appointment on it, scheduled for 2 weeks later. I said thanks but I really need to think about this a little. But then something really good happened on that Friday - I was out of the hospital well before 10am! A minor miracle happened!
Since the brachytherapy I have coughed up zero blood which tells me that this was the right thing to do. Finally - I was past this hurdle. I had an appointment with my oncologist last week. I have probably explained this before but my oncologist is really the quarterback of my treatments, he directs what needs to be done and I rely on him to answer my questions and help me make decisions about my care. So we spent considerable time talking about whether or not to go ahead with this radiation. I hate it when they say "the decision is yours" but that is ultimately what he said. My point is that we have been trying for months to get me back on Nexavar and we were finally at a point where it made some sense to do that because the drug should shrink the tumor just like radiation should. He said that was a valid point and he would not argue if that is what I decided BUT that my tumors have shown to be very radio-responsive (that means that radiation works very well on them) and that the more conservative approach would be to do the radiation first because it would have a more permanent effect than Nexavar would. So I reluctantly decided on doing the radiation first. The good news is that I will only need 8 treatments, the bad news is that I need to wait at least 2 weeks after the last treatment before starting my drug therapy. I had my first treatment last Thursday and will have my last one June 1st, so that means I am looking at about mid-June for starting Nexavar, almost 7 months after stopping it last November. Let's keep our fingers crossed that nothing else pops up between now and then!
Had enough of all this medical talk? Me too - let's move on to the fun stuff I've been doing. Actually not a whole lot. But I did get to go to the Milwaukee Public Museum to see their display on the Dead Sea Scrolls, a very interesting exhibit! These are ancient scrolls, dating from about 100 BC to 100 AD, that were discovered in caves near the Dead Sea about 1947. Most of these scrolls had deteriorated to fragments so translating and interpreting them has been a major project. The best way I have of describing these scrolls is they were a precursor to the Bible, describing the events of that time period as well as earlier times. If you have an interest in this portion of history and have opportunity to see this exhibit, I would recommend it. The Milwaukee display closes June 6th so move fast if you want to see it here!
Side note - even our calendar has become politically correct. BC has now become BCE and AD becomes CE. So instead of "Before Christ" we have "Before the Common Era" and instead of "Anno Domini" (the year of Our Lord) we have the "Common Era". So even though we all follow a calendar designed by a Christian (Pope Gregory) we now have to remove any reference to religion from these designations. Sometimes I really hate people! I don't know which people I'm hating now - but I'm sure I can track them down.
So now that I have raised my blood pressure I better cut this posting off. Thanks for staying with me - I'll be back to you sooner next time. I promise!
Be Well - Be Blessed!
Thursday, May 6, 2010
Today was brachytherapy part 1 and things went pretty much as planned. I was in surgery by 7:30 where they got the catheter placed, I had 2 treatments today and now am waiting for my 3rd and final treatment tomorrow morning.
As I sit in bed right now I have about two feet of plastic tube hanging out of my nose which they have wrapped around my face and taped down. I am quite a sight to behold! If I was still single I'm sure the ladies would be lining up to meet me. Yeah ...... sure. More important than how I look is how I feel, which is best described as uncomfortable. This thing hanging out of my nose is stiff and pulls which makes it a little painful. But I only have to live with it overnight so I can deal with it.
I'm being fed right now. I kind of like the setup here, it's similar to an IV pump where they hang a container of food, run the line through the pump and attach it to my feeding tube. Then I just wait for it to pump in the required amount, I don't have to hold on to anything so I have both hands free to type out this blog entry for you! Pretty handy but I don't think I will buy a pump for home. They are slower than just using good old gravity but here in the hospital I don't have to rush to get anything done.
The plan is for me to get my final treatment tomorrow at 8:00 am and then hopefully be released quickly so I can head home. Thanks for checking in on me - I'll be back in touch as soon as I can.
Be Well - Be Blessed!
Wednesday, May 5, 2010
I concluded my last post 2 weeks ago by telling you I thought the next 2 weeks would be uneventful and I was pretty much correct. My birthday was in there on the 30th of April so there was a little bit of excitement for the weekend. No cake for me but I got a candle in a cupcake with ice cream that I watched my wife eat! No, she wasn't torturing me, she was just making sure that I didn't miss out on the traditional birthday songs. I say songs because in our house we have the birthday song that everyone knows plus we enjoy the McManus birthday song that my sister-in-law Terry brought to us when she married my brother Jerry. Some no-fun people hear it and say "oh, that's awful" so I will not share the lyrics here but you can email me privately and I will send them to you. It's much more fun than the other one - start a new tradition in your home! Anyway I had visitors every day over the weekend, our good friends and former neighbors from North Prairie Chris & Lori stopped with their daughter Caitlyn on Friday night, (congratulations on the new job Chris!), brother Jerry came over Saturday night while our wives went art crawling (we had the better deal - we watched Tora, Tora, Tora!) and finally Pete came over Sunday night. So I got to extend my birthday over 3 days! Thanks to all of you who remembered me! I had a couple requests to throw another party like last year but sorry, that was a once in a lifetime event. If you missed it I feel sorry for you, just ask anyone who was there.
The only other excitement for me during the last 2 weeks was a few trips to the hospital. I have been dealing with a lot of stomach pain & digestion issues and have been working with the doc and nurses trying to get that straightened out. I'm sure no one wants to hear the details of my bathroom issues so I'll just say it is a process and we are working through it. I did get a new g-tube (feeding tube) installed last week, as I learned it is supposed to be replaced every 3 months. Mine had been in over 4 but I always take good care to keep it clean so no harm done, but I set an appointment for 3 months to get it changed again so I don't forget. My shingles have been clearing up nicely, they are almost all gone. As I said before, they never really bothered me in terms of pain like a lot people suffer from. But I am glad they are gone so I can move on with my other treatments.
Which brings us to tomorrow. I have to be at the hospital at the ungodly hour of 5:30 am to start on my brachytherapy. The full description of what I am getting is High Dose Rate Endobronchial Brachytherapy. Instead of me trying to describe how it works you can click here and get a much better description than I could give of how the process works. The only additional part for me is they will first do a bronchoscopy to provide a path for the catheter. I will be getting 2 treatments on Thursday and 1 more on Friday morning, so hopefully I'll be released by mid-day Friday. I'll try to get an update posted as soon as possible but I am not sure when that will be. I don't know how active I can be in between treatments, but I'll get something up by the weekend anyway.
One last thought - don't forget that this Sunday is Mother's Day! All you sons and daughters work hard to make Mom's day special for her! She deserves it! And as my Mom told me when I was younger - "Remember, I brought you into this world, I can take you out!" I think she was just kidding. I think......
Be Well - Be Blessed!